Terminally Ill Adults (End of Life) Bill

Lord Moylan Excerpts

Friday 20th March 2026 Lords Chamber

Moved by

[Lord Moylan]

175: Clause 5, page 3, line 21, at end insert—
“(aa) where the prognosis is based on a median life expectancy, the distribution of the data underlying the prognosis;”Member's explanatory statement
This amendment requires the registered medical practitioner to discuss the underlying data on survival from which the median prognosis has been calculated

[Lord Moylan (Con)]

My Lords, I will speak to Amendments 175 and 384, in my name, and I am grateful to the noble Baroness, Lady Fox of Buckley, for her support.

These amendments concern prognosis. We have discussed prognosis briefly in previous debates, but I wanted to raise this in the context of my own experience of cancer and to bring some sort of mathematical thinking to bear on the question. In August 2023, I was diagnosed with stage 4 oesophageal cancer. It was a fatal diagnosis and I was told that I had 12 months to live—18 months, if the character of my tumour qualified for immunotherapy, which it did. I do not need to be congratulated on being particularly brave for sharing this story, since noble Lords will hear, if they stick around, that the story has a happy ending.

Within a week or so of that diagnosis, a friend of mine sent me an article which had been written in 1991 by Professor Stephen Jay Gould of Harvard University. Professor Gould was an evolutionary biologist, and he was quite well known because he wrote a number of popularising science books—the sort of thing that sixth-formers and undergraduates would have read widely. He was a well-known and liked figure. The article was about his story. In 1982, he had been diagnosed with abdominal mesothelioma, a fatal condition, and the hospital would not give him a prognosis. When he got back to Harvard, he went straight to the medical library, and he found on reviewing the literature that he had eight months to live.

After about 15 minutes of shock, he began to think about what that meant, and he realised that the prognosis was in fact, arithmetically speaking, a median. All that it actually meant was that half the people in his condition would be dead by eight months and the other half would live longer than eight months. In fact, this median told him nothing about himself; it was an abstraction. To understand his own prospects, he had to look at the underlying data. When he looked at it, he found that quite a lot of people lived quite a long time beyond eight months in his condition. He said that

“all evolutionary biologists know that variation itself … is the hard reality … Means and medians are the abstractions”.

He asked himself, “What do I have to do to be one of those people who live a long time?” Speaking to oncologists, he learned that the universal response from all of them was that the key to survival in cancer was a positive attitude. To quote again briefly from the article,

“those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, and with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say tend to live longer”.

That is how he approached it, and I think we can learn a few lessons from this. I would like to run through what I think they are.

[Baroness Royall of Blaisdon (Lab)]

My Lords, what the noble Lord says and the article that he cites are very interesting. I am jolly glad that, for some people who have positive attitudes, they live a long time with their cancer. I know from personal circumstances, as do many other people around this Chamber, that we have had loved ones who have had very positive attitudes towards their cancer and they have died.

[Lord Moylan (Con)]

My Lords, I am not saying—nor was anybody—that a positive attitude on its own is going to save somebody from cancer. Professor Gould also benefited from the fact that he had the best medical treatment, and he went on various experimental courses. That was not my point at all. But people with a positive attitude, as I quoted, tend to live longer. I think that is scientifically demonstrable. I am surprised at the noble Baroness’s intervention.

I think we can learn some lessons from this. First, prognoses are not generally individuated. They are medians drawn from large data sets based on clinical trials. As Professor Gould said, if you get a prognosis of six months, the average person will think that means that they are going to be dead in six months, which, from a scientific point of view, is precisely the wrong conclusion.

Secondly, even when a prognosis is not based on a median but is an attempt by a doctor to give an individual assessment, it is very likely to be wrong. There are well-established studies on this. I will cite just one, which is Orlovic et al in 2023. It shows that, beyond 14 days, a clinician’s prognosis is almost always wrong. It is extremely unreliable. Within that shorter period of a week or two, a doctor and indeed an experienced nurse can very often say, with great reliability, that somebody is not going to last very much longer. But beyond that, an individual prognosis is of very little value indeed.

I think we all accept that for anyone who gets a prognosis, there is a degree of unreliability about it. Nobody believes that a six-month prognosis means exactly six months, or that eight months means exactly eight months, but we have a tendency to think that it is because we do not have enough knowledge—that with a bit more science and research, we could refine that prognosis so that it was more accurate. But as Professor Gould pointed out, the prognosis is merely an abstraction arising from the variability in the data. It is not that we cannot make the prognosis more accurate; it is that—

[Baroness Murphy (CB)]

We have discussed this issue at some length before, but I wonder if the noble Lord, Lord Moylan, has considered that the Bill does not say anything about a definite diagnosis. The phrase is “can reasonably be expected”. It does not mean that anybody has to agree with a diagnosis that it will be four, five or six months, or any particular time; it is “can reasonably be expected”.

I would like to come back on the noble Lord’s issue about people with a positive attitude. Does he accept that it is not just people with a very positive attitude who have good expectations? There are now numerous studies of people with breast cancer showing that the alternative, to totally deny it, also has a slightly better prognosis. There are different ways of approaching these bad news prognoses and people can adapt their own way of dealing with issues from them. I hope he will note that.

[Lord Moylan (Con)]

I am now precluded from taking further interventions, because there is a limit on how long I can speak and that was a very excessive intervention. I will discuss with the noble Baroness outside the Chamber what a reasonable expectation is, if it is not based on a prognosis. I do not know what the functional difference is. As for being in denial, funnily enough, an oncologist said to me that being a bit in denial is quite a good thing. In my own case, I managed to combine a positive attitude and a certain sense of denial; I agree that these things can work. It is quite complicated. But none the less, I am going to continue with what I wanted to say.

Thirdly, the title of Professor Gould’s article was, quite subtly, The Median Isn’t the Message. Yet at the heart of the Bill is a six-month prognosis—we may call it a reasonable expectation—in which that is exactly the message. It is that flawed message which we are making the heart of the Bill.

Lastly, I think we are all agreed that a positive attitude can help, even if denial can help as well, but in using this Bill, we do not inculcate a positive attitude. What we actually say is: “You have six months to live and here is the pills option. That’s another option you can take”. We should be promoting a positive attitude, and the Bill does not do that.

My Amendments 175 and 384 simply require that in the three doctor encounters that are required—in the preliminary discussion, with the co-ordinating doctor and with the independent doctor—there is an explanation of the underlying mathematics or, if you like, the underlying data of the condition that the person has as part of the conversation. The amendments would make that mandatory, so that the idea that the six-month diagnosis is a prediction is not lodged in the mind of the patient.

Professor Gould died in 2002. That was 20 years after his original diagnosis, and he did not die of mesothelioma. In my own case, I took Professor Gould’s article to my oncologist—it was our second meeting—and I said that, in the light of his experience, I was not satisfied with 18 months, that my target was 20 years and that anything less I would consider failure. It seems to have worked because, within three months of the diagnosis, I was discovered to be in complete metabolic remission, a condition I have stayed in. If you have had stage 4 cancer, they will not use the word “cured”, but I am as close to cured as you can be, and I am in complete metabolic remission. I still have 18 years to go on the bargain I struck with my oncologist.

I occasionally hear rather rude remarks about Dame Esther Rantzen—that she was given so long to live and she is still alive years later. I never share those comments; I reject that attitude completely. There are lots of people, such as her and me, who live out there in the farther reaches of the third standard deviation, with our heads hard up against the roof of the bell curve. That is natural because, as Professor Gould says, variation is the reality and the prognosis—the median—is the abstraction.

We have put something false and misleading at the heart of this Bill. There are very few conditions for a person to embark on a course that leads them to an assisted death; one is residence, one is capacity and one is this six-month prognosis. We have put this right at the heart of the Bill, and it is, as I say, false and misleading. It is a fundamental flaw in the Bill, and I would like noble Lords to reflect on that and I hope, on that basis, at the very least, agree my amendments. I beg to move.

[Lord Carlile of Berriew (CB)]

My Lords, “All’s Well That Ends Well”, and it is always a pleasure to follow such a story, particularly as it is the story of someone who told it to your Lordships himself.

I put my name to the noble Lord’s amendment and intend to address it not from the viewpoint of positivity and negativity—I tend to view that as mostly potluck— but from the viewpoint of facts. The fact I start with is an assumption: that everybody who is given a prognosis by his or her doctor desires to make an informed decision and, if they wish to make such an informed decision, that it should be based on some factual and scientific basis. All that these amendments would do —I speak not particularly to their very words but to their meaning—is require that a doctor or any other clinician who is giving a prognosis should do so on a solid medical and scientific basis: a prognosis that is founded in medicine, not stories and the last three patients they happen to have seen who had a serious illness.

I have spent a lot of time in recent weeks reading articles. There are some amazing American articles in which huge statistical samples are taken, but on this subject they all come to a similar position. For example, in one major study, only about 20% of predictions of six-month deaths were within a close range at all of ultimate survival. This is a very unscientific part of what clinicians tell their patients.

Judging the moment of death becomes very difficult the further you are away from the actual death, but it is very difficult to know how far away you are from the actual death. When my father—who was the most reasonable person I have ever known, by the way—was dying, the night before he died, the last thing he said to me was that I was to wear his black suit for the funeral because he thought mine was scruffy. He and I had been the same size at a certain point in our lives, and of course I did. We knew the moment he said that—because I knew how ill he was, the family were there, the doctor was there, we were going through his last moments and it was a very happy death, a great family deathbed scene—that he would be dead by the following day. He died the following morning.

However, when someone walks into the consulting room like the noble Lord, Lord Moylan, and is told that he is seriously ill, it is just an opinion at that stage on the part of the doctor, who may have varied experience and may actually have no scientific basis for what he or she is saying. Even what is now called GEST, the geriatric end-of-life screening tool, which uses algorithms and has tens of thousands of examples in it, still offers only varying levels of probability. I have also looked at actuarial tables because a surprising number of elderly and very ill people try to insure their lives for a relatively short period. A lot of companies insure senior directors for one year; I think it is called key person insurance. It is all based on mathematics, but it is not actually science.

So I do not think it is asking much of the noble and learned Lord that there should be a provision in the Bill that means that, in every single case when the patient asks for an informed decision, he or she is given the basis upon which that information is founded.

--- Later in debate ---

[Lord Young of Norwood Green (Lab)]

My Lords, I only want to challenge the point that was made that the Bill suggests that six months is inevitable. It does not do that at all. In fact, all Clause 7 says is that if you go to the doctor, there will be a record of a preliminary discussion. It does not say anything else. Clause 8 refers to the initial request for assistance and first declaration. Where does the idea come from that the Bill somehow inevitably leads to a six-month progression? There is no such thing in it, other than the fact that the doctor is required by law to produce a written record of the preliminary discussion. In that preliminary discussion, he or she could raise a whole range of things, as we have heard from noble Baroness, Lady Cass, and a number of others.

[Lord Moylan (Con)]

We are all agreed that the reference to six months is to be found in Clause 2, where it says that

“an inevitably progressive illness or disease which cannot be reversed by treatment, and … the person’s death in consequence of that illness or disease can reasonably be expected within six months”.

[Lord Hamilton of Epsom (Con)]

My Lords, I have always considered that the six months was critical to the essence of this Bill, because there has to be some point at which doctors say that you are likely to die. Misdiagnosis has been a problem. I recognise the remarks of the noble Baroness, Lady Murphy. We have discussed misdiagnosis before, but when we did, and it was then summed up by the noble and learned Lord, Lord Falconer, he airily said that perhaps some of these diagnoses of six months may be a little wrong and it could be more like eight months. What he failed to address was my noble friend Lord Polak, who was given six months to live. That was 32 years ago—and we are still counting. When you get things that badly wrong, you have to really question whether these diagnoses are going to be in any way meaningful at all.

It seems to me that, if we have these tremendous variations, they totally undermine the whole essence of the Bill. We are saying that, if people have got only six months to live, they should apply for assisted dying, but it may be that they live for years afterwards.

--- Later in debate ---

[Baroness Finlay of Llandaff (CB)]

I would be delighted to raise it outside the Chamber; it was a little more complicated than those three points.

[Lord Moylan (Con)]

My Lords, before he vanishes, I thank the noble Lord, Lord Carlile of Berriew, and apologise to him for not acknowledging in my opening remarks the fact that he had added his name to my Amendment 175.

I would be disappointed if the noble and learned Lord were, at this advanced stage of Committee, to agree to an amendment proposed to the Bill. He has not disappointed us; he has rejected it. The fact is that Clause 5 requires the discussion of prognosis, as he says. Any prognosis worth its salt has some data at the basis of it, and I am simply asking that that position—the spread of that data and the range, as my noble friend Lord Effingham referred to it—should be a part of that discussion so that people understand that, if they are told they have so many months to live, that is not a prediction but, in technical terms, a median based on underlying data. That data should be disclosed.

This is an unusual debate for me because it is the only one in which I agree with everything that everybody—apart from the noble and learned Lord—has said. I even found myself agreeing with the noble Baroness, Lady Jay of Paddington, that the language of combat and struggle is really not appropriate for people who are suffering from cancer. I never use it myself and, although I quoted Professor Gould using it in my speech, it is not the natural language that I would propose.

I agree with the noble Baroness, Lady Royall, that of course simply talking about positive attitude, and indeed attributing moral value to that, is one aspect only of the management of the diagnosis one might find oneself facing. I am not a Christian Scientist, and I certainly believe that medical treatment—the most advanced medical treatment one can get hold of—is absolutely crucial and almost certainly much more important.

I agree to some extent with the noble Baroness, Lady Hayter, that it is possible for some clinicians at a specific time to be able to tell simply by looking at people that they are not going to live very much longer. But the evidence we have—there are studies about this—is that that is true where there is a very short time left to live, of 14 days or less. People with 14 days or less to live are, in my view, unlikely to have access to the provisions of this Bill simply because there is quite an elaborate bureaucracy attached to it through which one has to pass, and that takes time. The key thing for this Bill is the six months written in it. It is that that we have to look at, and six months prognoses are not particularly accurate. Where there are medians, it is important to understand the basic data.